Celiac Disease in Children
Birthday party guests usually bring gifts, not cake. So imagine my surprise when at my daughter’s eighth birthday party I answered the door to a mother holding a beautifully decorated cake complete with candles. Sonya and her son Jake stepped in and opened my eyes.
As the children played, Sonya and I talked. She told me that Jake had Celiac Disease, a condition that I had never heard of till that point. She explained that people with Celiac Disease were unable to digest gluten. When they eat foods containing gluten, their immune system fights it, which damages their small intestines. This damage can lead to a host of problems, including malnutrition.
I took in the information and summarized, “So, Jake is allergic to wheat.” My assessment was not entirely correct and she continued to explain. While a wheat allergy is uncomfortable and a severe reaction can be deadly, it does not cause the permanent damage that Celiac Disease does. What Jake has is considered an autoimmune disorder because his immune system damages his body when it attacks the gluten.
She told me the disease is hereditary. Several people in their family had the disorder, but none had been diagnosed as early as Jake. Sonya said when Jake was six months old, he began having severe diarrhea. He was soiling fifteen to twenty diapers a day. She took him to the pediatrician, who said if there was no improvement in two weeks to return. She did and still the doctor did nothing. Knowing that this was more than a bug, Sonya persisted. She took Jake to three more doctors. Finally she was referred to a gastroenterologist. Through a series of tests, it was discovered that Jake had Celiac Disease. The condition had been triggered when Sonya introduced cereal to his diet.
She talked about how this diagnosis changed not only the family diet, but their way of life. Many things parents took for granted, such as pizza parties and treats handed out by teachers, had a different meaning for Sonya. But, she was determined that Jake handle is own disease and not feel singled out. Below are some of the ways she accomplished that.
- Education. Sonya educated everyone who came in contact with Jake. When he was first diagnosed, she and her husband spent a great deal of time educating themselves. They not only learned about the disease, they also learned about how to avoid gluten and where it is hidden. Because of gluten’s bonding power, it found in numerous products, not just wheat and food stuffs. Gluten is present in many medications and of all places, in PlayDoh. There was much to learn about keeping their son gluten free, and they shared this knowledge.
- Parents. Just as she had done with me, Sonya talked with parents about Celiac Disease. When Jake was invited to a party or sleepover, she would call the parents to discuss his diet. She talked with parents on back to school night and at sporting events. At first, she found it awkward, but as time went on she discovered that most people were open to being educated and willing to accommodate her son’s special needs.
- School Days. At the beginning of every school year, she set meetings with the principal, school nurse, and teacher. She provided them with a one page document explaining Celiac Disease, the adverse effects of accidental gluten ingestion, and Jake’s diet. She also provided a list of foods that contain gluten. At the bottom of that list was her contact numbers in case there was a question. It was better to be safe than sorry.
- School Lunch. In addition to the principal, nurse, and teacher, Sonya made a beginning of the year appointment with the school dietitian. She gave this person the same information, and discussed menus and food preparation. She would talk about the foods he could and could not have. She also brought up how important it was to use clean utensils so cross-contamination did not occur. After this meeting, she would decide if she was comfortable enough with this person to let Jake buy lunch at school. Sonya also talked with the lunch monitors about Jake’s condition and how he was not allowed to swap foods. Swapping foods was a lunchtime ritual, but for Jake it could be harmful.
- Treats for the Teacher. Sonya gave Jake’s teacher a large bag of his favorite gluten free candy. This enabled her to give Jake treats for rewards or special events. This kept Jake from feeling singled out or short-changed because of his diet.
- Birthdays. Each year, Sonya asked the teacher for a list of birthdays and class parties. This made it possible for her to plan for these events in advance. She often called the parents of the birthday child and offered to supply a cupcake for her son. For Jake’s birthday, she would always bring a yummy gluten free treat for the whole class. On these occasions, Sonya often found that classmates were interested in Jake’s special diet. This gave her an opportunity to answer questions and educate.
I realized something as I listened to Sonya talk about how her family handled Jake’s Celiac Disease. I realized that I was lucky to have been offered this education. Had this mother chosen to just hand me the cake with a short explanation, I would have honored her wishes. But I wouldn’t have understood her special needs child or her life.
